We finally, finally, finally received the sunglasses from RNIB which I ordered about a month ago. Heaven forbid she lose some and I ever need more at short notice. After I placed the order, a friend told me about some called Julbo which I thought I might keep in the back of my mind as a backup high street pair. Then she lost one pair of Baby Banz (threw them out of the pram), then Martin called me yesterday morning to say that she had thrown the second pair out of the pram on his way to the bus stop with her. He retraced his steps all the way home and didn't have them with him. So I raced online and ordered the Julbo ones: the RNIB ones hadn't arrived, she'd lost two pairs of Baby Banz in two weeks and we were down to the Beaba ones and Emily's toddler ones so I thought I'd better make it a priority. Then, in the mail appeared the RNIB ones and they were Julbo brand too! Then Amy told me that Charlotte had her pink Banz with her and Martin had found them but not told me. Oh well, the other Julbos arrive tomorrow and are 96% light blocking which is more than the RNIB ones. (Plus, they are a more girly colour!)
The RNIB ones have amber lenses. They certainly make everything look a bit strange. I guess it won't bother Charlotte because she doesn't have any colour vision anyway. They certainly increase contrast but they don't seem to increase anything beyond making lights lighter and darks darker. I don't see an improvement in detail. I haven't taken them outside and looked through them myself yet. They also don't fit very close to her face so she is not getting any light-blocking advantage there. I can see her eyes through the lenses so they probably aren't dark enough. I'll be interested to see how Charlotte reacts compared to the regular Julbo which are darker but with grey lenses. We are having our summer this week so we have really sunny days and she is a bit unhappy.
We had Occupational Therapy today and Charlotte is still on track. The OT's summary is that she doesn't think Charlotte's vision problems are holding her back developmentally. This is great news. We are going to see her again in October for ongoing monitoring but so far, so good. Yay!
I've also been reading some interesting things about genetic research this week. I read any reports about genetics with far more interest than I ever used to. This particular news report was referring to common ailments such as heart disease but the point that stuck out at me was the progress that has been made in the human genome project in the last 10 years. It is almost unfathomable and bodes well for equally impressive progress in the next 10 years.
Wednesday 23 June 2010
Sunday 20 June 2010
Childcare: to tell or not to tell?
My dilemma today is in the placement of an advertisement for a new nanny. I am going back to work in September, 3 days per week, and I am advertising next week for a nanny.
In drafting the ad, I am thinking about who I want to care for Charlotte. On top of all the usual concerns over finding someone caring and competent to look after my children when I am not with them, I have this extra layer of concerns of what Charlotte may need. Or may not. She is only a baby and not mobile and I don't really have a very good sense yet of how "special need-y" she may turn out to be.
My instinct is to treat this as a normal recruitment process and talk to the person about the extra care she needs at the interview stage. Sort of as a "By the way, she needs sunglasses on when she goes outside". What about the curtains drawn part? Am I recruiting someone for a job where I am requiring them to spend most of their day in the dark? I don't like doing it and I am Charlotte's mother, how can I ask someone else to? And how can I not ask them to? Maybe it will be good for Charlotte to have a bit of a middle ground lighting level around the house. There will also be breaks for the nanny: when Charlotte has her nap, during the school run and when Charlotte is playing by herself in her room, those are all times that the nanny doesn't have to be in the dim lighting. During the winter, as long as she doesn't turn on any lights, she probably won't have to draw the curtains.
What about reciprocity? If I don't disclose Charlotte's medical concerns whereby they affect the nanny's working conditions, I should not be surprised if a candidate were to not disclose something about herself that may affect her ability to do the job too. Am I setting a bad precedent for Charlotte in her future life applying for jobs and such?
At the end of it, I'm not that concerned about finding someone good, but it does add an extra layer of complexity to everything.
In drafting the ad, I am thinking about who I want to care for Charlotte. On top of all the usual concerns over finding someone caring and competent to look after my children when I am not with them, I have this extra layer of concerns of what Charlotte may need. Or may not. She is only a baby and not mobile and I don't really have a very good sense yet of how "special need-y" she may turn out to be.
My instinct is to treat this as a normal recruitment process and talk to the person about the extra care she needs at the interview stage. Sort of as a "By the way, she needs sunglasses on when she goes outside". What about the curtains drawn part? Am I recruiting someone for a job where I am requiring them to spend most of their day in the dark? I don't like doing it and I am Charlotte's mother, how can I ask someone else to? And how can I not ask them to? Maybe it will be good for Charlotte to have a bit of a middle ground lighting level around the house. There will also be breaks for the nanny: when Charlotte has her nap, during the school run and when Charlotte is playing by herself in her room, those are all times that the nanny doesn't have to be in the dim lighting. During the winter, as long as she doesn't turn on any lights, she probably won't have to draw the curtains.
What about reciprocity? If I don't disclose Charlotte's medical concerns whereby they affect the nanny's working conditions, I should not be surprised if a candidate were to not disclose something about herself that may affect her ability to do the job too. Am I setting a bad precedent for Charlotte in her future life applying for jobs and such?
At the end of it, I'm not that concerned about finding someone good, but it does add an extra layer of complexity to everything.
Saturday 19 June 2010
Another mother
I had a great conversation on Tuesday with the mother of another Achromat-kid. She is a member of the Facebook group for Achromatopsia. I had messaged a different one but we hadn't spoken on the phone. Instead, I spoke to Louise. She seemed really nice and hopefully we might be able to meet in person one day soon. Maybe I am an over-contacter but I feel like talking to her every day!
Sunglasses from Moorfields?
I have an enquiry outstanding with them at the moment to prescribe some sunglasses for Charlotte. Apparently they have quite the low-vision centre there. It is so wonderful to be living so close to such a world-class facility - and I am so grateful that the care we have recieved is at no charge to us. I am extremely grateful to the NHS, I have to admit that I would not have taken Charlotte to as many different health professionals as I have if we were paying for all this care.
The sunglasses idea came from another mother of an Achroma-kid who said that they went to the optician at Moorfields and came away with some sunglasses. I hadn't bothered because I knew I had shopped quite extensively on the high street but I thought they might be able to help me with the required darkeness and hopefully a red tint. They have to ask Prof Moore's team what they recommend for Achromats, hopefully what they recommend tallies with what they have recommended themselves online.
The sunglasses idea came from another mother of an Achroma-kid who said that they went to the optician at Moorfields and came away with some sunglasses. I hadn't bothered because I knew I had shopped quite extensively on the high street but I thought they might be able to help me with the required darkeness and hopefully a red tint. They have to ask Prof Moore's team what they recommend for Achromats, hopefully what they recommend tallies with what they have recommended themselves online.
Poor sick baby
Poor Charlotte is poorly today. She has her first fever and isn't feeling very good. She isn't responding that well to medicine either but she is a little trooper and is still very sweet. We were supposed to take her to a birthday party today but I left her at home with Martin and just took Emily in the end. Hopefully she will pull through soon.
Sunday 13 June 2010
Baby-friends
Today Charlotte went to a party of her one and only baby-friend! When you have one child, you join all the mother's groups around and take them on a baby-related outing every day. When you have subsequent children, you just take them around with you while you do the activities that the older one is doing. Hence, Emily had loads of baby-friends and Charlotte has one, and that one is only because a friend of mine lives reasonably locally and had a baby a few months before Charlotte was born.
It was really cute seeing Charlotte on a rug surrounded by other babies and having them all tumbling around all over each other. She didn't have a clue what was going on but I guess none of them did!
It was really cute seeing Charlotte on a rug surrounded by other babies and having them all tumbling around all over each other. She didn't have a clue what was going on but I guess none of them did!
Blind as a bat
She really is. I don't say it in a mean way and I know she can see a lot, but Charlotte's blindness is becomming more apparent to me as time goes by. I wish I could keep her as a little baby forever and then it would be normal for her to be completely dependant on me. I am going to struggle to move her toward independance as she gets older.
The lights and things that the low vision teacher recommended don't seem to be holding her interest very much any more. She does play beautifully with toys in her close range, she'll happily sit for ages. Her standing is coming along really well and I tested her on it the other night, she was happy to let go with one hand to reach for a toy.
Many of the fears I first had about having a blind child will not come to pass: she won't walk into walls, she will be able to read, she will be able to be independant and mobile and that is all such a gift. But we always want more, don't we?
We have found a wonderful school that I am hopefull the girls will be accepted into. When I say "we have found" that's not really true because lots of people know about it. It is the best school in the country, consistently ranked no 1 in the league tables with 100% of their graduates attending university, 40% of them to Oxford and Cambridge. The founding mission and driving ethos of the school is the thing that impressed me most (more even than the extensive gounds and facilites): it intends to provide an ambitious academic education for women. That's what I keep reminding myself, particularly for Charlotte: aim high (little bat!)
The lights and things that the low vision teacher recommended don't seem to be holding her interest very much any more. She does play beautifully with toys in her close range, she'll happily sit for ages. Her standing is coming along really well and I tested her on it the other night, she was happy to let go with one hand to reach for a toy.
Many of the fears I first had about having a blind child will not come to pass: she won't walk into walls, she will be able to read, she will be able to be independant and mobile and that is all such a gift. But we always want more, don't we?
We have found a wonderful school that I am hopefull the girls will be accepted into. When I say "we have found" that's not really true because lots of people know about it. It is the best school in the country, consistently ranked no 1 in the league tables with 100% of their graduates attending university, 40% of them to Oxford and Cambridge. The founding mission and driving ethos of the school is the thing that impressed me most (more even than the extensive gounds and facilites): it intends to provide an ambitious academic education for women. That's what I keep reminding myself, particularly for Charlotte: aim high (little bat!)
Friday 11 June 2010
Obvious differences
We saw Charlotte's little cousin yesterday. We get so used to her that we forget just how different she is from other babies. Conrad can see across the room with no problems, Charlotte doesn't bother to look at anything further than arm's length from her face and nothing at all when it is bright. I feel guilty, I feel as though I should spend more time extending her vision. I guess I should stop making excuses and just do it. She's just so content playing with things up close and I figure the rest will come in time.
Something positive that happened yesterday: one of the mothers from Facebook contacted me by phone. I didn't have time to talk but she said I can call her next week.
Something positive that happened yesterday: one of the mothers from Facebook contacted me by phone. I didn't have time to talk but she said I can call her next week.
Sunday 6 June 2010
Their own room
The two little girls are in their own bedroom now. They are sharing for the first time tonight so we will have to see how that goes.
Last night was the first night that Charlotte was in the children's bedroom but Emily was away, at a sleepover at Amy's house, so they weren't together.
I was in pieces last night, it felt like my babies had grown up and left home! I can't believe how quickly they have got older and I realise how little they will want us in their lives through their teens and twenties. I'm going to miss them so much. Motherhood is so cruel: it requires us to lavish on them all our time, attention and energy for years, and then be cast adrift as our children reject our efforts to be close to them. And we wonder why mothers of older children have no life of their own? It's because caring for younger children requires us to have no life of our own.
I guess all this makes a good case for me to go back to work. One of the reasons I have always enjoyed working is becuase it gives me something to do and because I don't want to have nothing left of my own once the children don't want me around so much. On the other hand, if I give up work, I will just go to the gym instead!
All this being said, if and when Charlotte (in particular) insists on her independence, we will have done our job well.
Last night was the first night that Charlotte was in the children's bedroom but Emily was away, at a sleepover at Amy's house, so they weren't together.
I was in pieces last night, it felt like my babies had grown up and left home! I can't believe how quickly they have got older and I realise how little they will want us in their lives through their teens and twenties. I'm going to miss them so much. Motherhood is so cruel: it requires us to lavish on them all our time, attention and energy for years, and then be cast adrift as our children reject our efforts to be close to them. And we wonder why mothers of older children have no life of their own? It's because caring for younger children requires us to have no life of our own.
I guess all this makes a good case for me to go back to work. One of the reasons I have always enjoyed working is becuase it gives me something to do and because I don't want to have nothing left of my own once the children don't want me around so much. On the other hand, if I give up work, I will just go to the gym instead!
All this being said, if and when Charlotte (in particular) insists on her independence, we will have done our job well.
Thursday 3 June 2010
Review: The Island of the Colourblind by Oliver Sacks
Well, I wasn't blown away by this book and I don't even know if I would recommend it as a good read. I have to say I enjoyed the Achromatopsia Network books far more. But that is probably because they gave me information about Charlotte and that is what I am looking for right now.
The journey to the Pacific islands is portrayed enthusiastically and he gives a good overview of subjects as diverse as biology, botany, geology, history and Darwinism. What I wanted to read about were more personal accounts, even from Knut. But it was good to read about an outsiders's perception of Knut because many people with a condition may feel they are normal but not act like it to our way of thinking.
It's a very short book, the publishers have had to bundle it with another just to create enough pages to bind a book.
I don't think I'll be reading other Sacks' books, there's enough genetic curiosities in our lives to prevent me from being interested in reading about others'.
The journey to the Pacific islands is portrayed enthusiastically and he gives a good overview of subjects as diverse as biology, botany, geology, history and Darwinism. What I wanted to read about were more personal accounts, even from Knut. But it was good to read about an outsiders's perception of Knut because many people with a condition may feel they are normal but not act like it to our way of thinking.
It's a very short book, the publishers have had to bundle it with another just to create enough pages to bind a book.
I don't think I'll be reading other Sacks' books, there's enough genetic curiosities in our lives to prevent me from being interested in reading about others'.
Wednesday 2 June 2010
Genetic counselling
I heard back from the Genetic Counsellor at Moorfields today, the update is that if we were to get genetic testing done privately we would need to go and see one of Prof Cone's colleagues privately and then also pay for the testing. It's kind of what I expected. We had discussed it and decided that we were happy to wait for a suitable time to test her through the NHS, not because we don't want to spend the money but because we don't feel that this is so urgent that we need answers.
Some things to consider:
1. If we decide we want another baby, we probably want the testing because it might not be Achromatopsia. Having another baby is not high on my priority list but you never know how my feelings might change in a few years time. Charlotte is so wonderful that I would have 100 of her and I don't really care about the 1 in 4 odds. But if it was Leber's, or if Charlotte really starts to struggle, I might care more.
2. I will go to the GP Practice Nurse to have Charlotte's Swine Flu vaccine done. Then I will ask her at what age she is comfortable drawing a blood sample for the genetic testing (they only need 4ml). Then I can arrange with Sophie for the equipment to be sent out and the sample analysed. I'm thinking this process could take 2 years, one for Charlotte to be old enough (about 2yrs old?) and another year for the sample to be tested and the results to arrive.
3. If a treatment is developed, testing will become a priority if Charlotte is to participate. Patients would need to be tested before any gene therapy and I'm imagining that the NHS would therefore have everything set up for us to be tested quite quickly.
Then I asked Sophie what her opinion was about Charlotte's ability to benefit from any future treatment, given the time it might take for something to be developed. She was very optimistic and said that once something gets good results in animal trials, it can progress quite quickly through human trials. I said that I imagined Charlotte might be the last of the Achromats and she said no, that would certainly be true for the 10 year old patients that they have but not for babies.
Fingers crossed/hope and pray for fast, accurate, successful trials...
Some things to consider:
1. If we decide we want another baby, we probably want the testing because it might not be Achromatopsia. Having another baby is not high on my priority list but you never know how my feelings might change in a few years time. Charlotte is so wonderful that I would have 100 of her and I don't really care about the 1 in 4 odds. But if it was Leber's, or if Charlotte really starts to struggle, I might care more.
2. I will go to the GP Practice Nurse to have Charlotte's Swine Flu vaccine done. Then I will ask her at what age she is comfortable drawing a blood sample for the genetic testing (they only need 4ml). Then I can arrange with Sophie for the equipment to be sent out and the sample analysed. I'm thinking this process could take 2 years, one for Charlotte to be old enough (about 2yrs old?) and another year for the sample to be tested and the results to arrive.
3. If a treatment is developed, testing will become a priority if Charlotte is to participate. Patients would need to be tested before any gene therapy and I'm imagining that the NHS would therefore have everything set up for us to be tested quite quickly.
Then I asked Sophie what her opinion was about Charlotte's ability to benefit from any future treatment, given the time it might take for something to be developed. She was very optimistic and said that once something gets good results in animal trials, it can progress quite quickly through human trials. I said that I imagined Charlotte might be the last of the Achromats and she said no, that would certainly be true for the 10 year old patients that they have but not for babies.
Fingers crossed/hope and pray for fast, accurate, successful trials...
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